Guide to writing your "Individual Profile"

o   Please write in the 3rd person (“Alex was born…”), and end with "As told by...his mom, his brother, etc"

o   Please remember this will be published on the website, so only share information that you are comfortable with the whole world seeing.

o   Please keep the word count to about 1000-1500 words. If it is easier, you can write the profile in a word doc, and copy and paste it below. 

o   TBRS Community will help with editing, so don’t feel too pressured to make it perfect. Share your story so you can be included on the website, and give the world a good picture of what it is like to be diagnosed with TBRS.

o   Suggestions on topics to include in your profile: First symptoms you noticed, path to diagnosis (including any inaccurate diagnoses you received), description of personality, strengths, likes, unique attributes, symptoms, etc.

o   If applicable, please comment on how finding the TBRS Community impacted or helped your family.

o   Check out the TBRS Website, for some lovely examples.

A. Image and Individual Profile Information Release

I hereby give The Tatton Brown Rahman Syndrome Community the absolute and irrevocable right and permission with respect to the photographs that he/she has taken (or that photos that I have provided) of myself and/or my minor child in which he/she may be included with others, as well as to the individual profile written information that I have included to share on www.tbrsyndrome.org:

a) To copyright the same in Tatton Brown Rahman Syndrome Community’s name or any other name that he/she may select;

b) To use, re-use, publish and re-publish the same in whole or in part, separately or in conjunction with other photographs, in any medium now or hereafter known, and for any purpose whatsoever, including (but not by way of limitation) illustration, promotion, advertising and trade, and;

I hereby release and discharge Tatton Brown Rahman Syndrome Community from all and any claims and demands ensuing from or in connection with the use of the photographs and individual profile information that I have provided, including any and all claims for libel and invasion of privacy.

B. Liability

Tatton Brown Rahman Syndrome Community is not responsible for any injuries inflicted upon any participating parties. Participant(s) will be responsible for their children and for themselves and release photographer from any claims against their person or their business.